I can’t wait to get ‘er done and hold this road race. Being a Race Director is very much like organizing your own wedding, except in my case, much more sad and depressing. Years from now when she has passed I’ll have all the time in the world to be depressed and lament on how much I miss her but not today. Today calls for action, it calls for determination, it calls for pushing down sad feelings and raising some money for research.

The race is on Sunday 10/28/12 and if you can’t attend but want to contribute there is a donate button on the right hand side of this page (scroll down). Thank you!

Register Online: http://www.active.com/running/hull-ma/team-rachel-race-4-a-cure-2012…

This was written by a dear friend, Denise about Rachel’s Mom.  Thank you Denise for sharing this with us and giving permission to share it with the world!

Last year Kat and myself, a scientist, had three amazing opportunities thanks to the funds raised last October by TeamRachel. It started out so simple. Two Moms meeting at the first day of preschool dropping our sons off at Seaside Montessori. We had never met though Kat was someone I knew was like nobody I had never met.

Upfront and to the point with the ability to make me blush but always in this amazing fun loving way we took a walk on a cold September day and she told me about Rachel and Battens Disease and life would never be the same.

A month later an amazing TeamRachel Race occurred and a month after that we were meeting at my house with an expert in the field of gene therapy over pizza and beer and a whiteboard. A month after that, grabbing a bagel and coffee from Weinberrgers we set off to Mass General in Boston to meet with scientists who study the Juvenile form of Batten Disease to learn of their latest research. Two months later we met with a top neuroscientist from Genzyme and also an expert on gene therapy in the brain, who discussed with us his experience with a clinical trial for the Infantile Batten Disease and our mouths dropped open as he explained how he saw areas of improvements to gene therapy for Infantile Batten Disease and discussed how it is his wish to piggyback this knowledge with a Juvenile Batten Disease clinical trial.

And all the while I watched this brilliant man who reminded us of a nice Einstein humbled by Kat, Mom of Rachel. Her knowledge, her questions, her ability to make everything feel real. Her presence cannot be ignored nor can her ability to bridge the people who can change the world with the families who need them. I knew when we left that day, this brilliant scientist who reminded us of a nice Einstein would be thinking a lot of Rachel and Kat

Months later the scientists from Mass General and the scientist from Genzyme came together for the first time (academic experts in Juvenile Batten Disease with industry gene therapy experts) meeting to discuss a potential collaboration for Juvenile Batten Disease. This is where we are now. Know this race makes a difference. Know it takes ordinary people to start doing the extraordinary.

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Please consider supporting Team Rachel Race 4 A Cure on October 28th, 2012.  A donation can be made by clicking the “Make a Donation” button on the right hand side of this page.

Thank you!  Donations are tax deductible!…